I'm a little frustrated..o.k., a LOT frustrated. Once I got answers after too many yrs of searching for an answer to 'why am I tired, why do I need another hip/knee/rotator cuff replaced?' I sent my husband, daughter, SIL and all loved 1's the relevant articles, research papers plus copies I got from the RA I see. Along w/ al the results from all the specialists I see because of the AS.
At 1st, hubby was very supportive & understanding, as was my daughter and others. When hubby made plans for us to go somewhere just to "get out of the house," I would agree because COVID or not, I hate being home 24/7, 365 days ....ugh. Now? I'm a certified hermit.
But then I would wake up & pain would envelope me, my eyes were not mine, ( someone must of stole them in the night.) These eyes I woke up to were like looking at darki-sh clouds or spiderwebs & it felt as though there were little hard needles poking the back of my eyes. I told hubby I couldn't go anywhere. He would look a tad upset bu tried his best to understand. That kind of empathy went on for awhile. The same with my daughter. She would not call as often to see if I could watch the 3 grand children that I love so much but can cause so much stress, lol.
Fast forward less than 2 yrs-hubby is getting irritated with why I don't have supper ready, why I don't want to go out just for a cup of coffee at our usual coffee hang-out. What's wrong with me, why am I so tired...all questions he now asks. He tells me, "It's good to get some fresh air, u need to get out of the house."
My daughter is going through some tough times w/ her hubby and of course 3 kids. Two are teen girls...'nugh said! The son is being weened off of 24/7 video gaming, ( not w/out hissy fits though.)
So lately she's been texting, " So mom, how are u today?" That's when I know to not even answer the text because if I do, that's her way of feeling around to see if I will babysit.
How soon they all seem to forget that most days I have 1 or more appts. Just getting ready to get there is stressful. If I'm able to drive, by the time I get home, I'm in tears, shaking, weak & just head staight for the bed. I shut the phone off. They seem to forget how on most days, just going to the store for a few things, ( there's 3 stoes w/ in walking distance,not that I can walk that far, lol,) can take 2 hrs because of the time, looking for the products waiting in line, etc...and all of that causes me stress. Stress seems to always, w/out fail, make any AS symptoms so much worse.
How soon they forget!!!
I think I'm going to start buying poster boards & on the days they seem to forget, I will put them up w/ sayings, facts, whatever has to do w/ AS in women to remind them. Once they remember again, I will take down the boards & replace them w/ all the beautiful pictures I usually hang up.